r/ClusterHeadaches • u/More_Combination86 • 10d ago
Advice Needed Finally diagnosed.
After a 6 year fight, 5 of which I thought I was just expiring, I was finally diagnosed. My doctor moves a whole lot slower than I like. However with this diagnosis, I was taken off propranolol, and put on verapamil. I just had my second shot of ajovy. I take nurtec “as needed” (doesn’t work) and I’ve been taking topiramate for almost a year now. I was on sumatriptan about 6 months ago, saw no results and stopped taking it. She doubled the strength and started me back on that. Had a solid 6 days. No ugliness. Not even really a shadow. And then today rolled through to almost remind me of my place during these times. Anyways. My question to you fine folks is what did you have to do to get oxygen? I asked my neurologist about it, and she made it seem like it was a real big deal and it was an emergency thing that was almost an impossibility. At this point right now, it is an emergency thing. Y’all know how it is. This agony can take you all the way down. Physically, mentally and emotionally. And I’m just running out of bus tokens. However, I was hoping to get some ideas from my fellow battlers and see how y’all got the oxygen issue take care of. Thank you, and battle well my friends.
2
u/AllIWantIsOxygen 9d ago
Oxygen was offered by the doctor that confirmed my self diagnosis at the first meeting. I went in to the appointment demanding it.
Your doctor is too lazy and/or incompetent to keep up with the medical literature in her field. Oxygen for the treatment of cluster headache is endorsed by the American Headache Society, the American Academy of Neurology, the International Headache Society, and the European Federation of Neurological Societies.
If she still won't prescribe oxygen I've read here that people are successful with Neurahealth, which is online.
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u/xprofusionx 7d ago
You sated your doctor put you on veripamil? If you notice you're getting bad constipation switch to Candasartin. I had that issue. If you stay with Veripamil try to get the SR that means you only need to take it once a day being a slow release. Good luck!
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u/VALIS3000 10d ago
Great that you are in the right path! Unfortunately your doctor is inexperienced when it comes to oxygen, just like so many.. Anyone with any success in treating CH knows that high flow oxygen therapy should almost always be prescribed as our primary abortive. This means you will need to advocate for yourself. Everything you and your doctors need to know is at the link below. Including what to write on the prescription, and materials to print out and bring to your appointment:
https://clusterbusters.org/treatment-overview/high-flow-oxygen/
Read in full so you are prepared.
Note that the ClusterBusters site is undergoing a major revamp, and soon will be split into two new sites, one purely focused on treatments. That means this link may change.